Inlight of the sensitive nature of the research topic as well as the mode of investigation, careful consideration was given to ethical concerns and addressing the needs and rights of participants (from both samples). I did my best to follow the guidelines offered by Shank (2002) for being an "ethical" qualitative researcher, which are as follows:
• Do no harm (e.g., obtain informed consent, ensure that participants are not harmed in any way, and be sensitive to the possibility that one's questions could evoke painful feelings).
• Be open (e.g., do not observe people without their knowledge, be willing to accept participants' viewpoints and decisions, allow them to read any material collected on them).
• Be honest (e.g., do not lie to participants, do not delude oneself, admit when one is wrong).
• Be careful (e.g., make sure that all work is documented, create an audit trail, only make claims and conclusions that can be traced back to the data collected).
This study was approved for protection of human subjects by the Ethics Committee at the University of KwaZulu-Natal as well as by Lehman College (where I am employed).
Itis the policy of my university that all research conducted by faculty must be approved beforehand by the university's own ethics committee or internal institutional review board (IRB).
Before the study began, all prospective participants were informed about the purpose of the study and given assurance about confidentiality and that their participation was voluntary and that they could withdraw at any time. They were reassured that their willingness or refusal to participate would in no way affect the services they or their loved ones received at any NOO, hospital etc. Informed, written consent (see Appendix I) was obtained prior to the first interview. Participants were advised that their verbal consent was ongoing; this is an important part of qualitative research because data and the dynamics around the collection of data change frequently. Munhall (1988) argued that it is essential for researchers to allow for negotiation and renegotiation of consent on an ongoing basis as informed consent on its own is just a "static, past tense concept" (p.
161).
Participants were informed that the interviews would be tape-recorded and I explained that my reason for doing so was that this was a more effective way to gather information than just taking notes. I experienced no resistance to tape-recording the interviews. I also explained that I would be doing all the transcripts myself. Participants were informed that transcripts and any handwritten notes would be labeled with an ID number and a pseudonym would be used to ensure anonymity. Participants were again assured that all information would be kept confidential and locked in a safe place.
As Horowitz, Ladden, and Moriarty (2002) indicated in their research with vulnerable families, "the research process may be stressful for participants when it elicits sensitive discussions, traumatic memories, or distressing feelings" (p. 328). Thus, participants were informed of potential risks as well as benefits associated with participation in the
present study. They were advised about the possibility that the interview could raise some uncomfortable feelings (e.g., sadness, heightened grief). Waldrop (2004) indicated that preparing for a qualitative study requires "thoughtful consideration of potential participant reactions" (p. 243). I made sure that participants were debriefed at the end of each interview and at the conclusion of the interview process. They were given my phone number to call if they needed to, and they were given a list of local community resources they could contact for support and assistance.
Itshould be pointed out that my concern for the emotional well-being of participants overrode my curiosity as a researcher. I attempted to balance my role as curious observer on the one hand with empathic human being on the other. I used a variety of empathic verbal and non-verbal responses to facilitate communication and to put participants at ease. I did not push participants and gave them permission throughout the interview process to take time out whenever they felt they needed it. If my intuition told me to slow the pace or change course or to suspend the interview, I did so. I was cognizant of the emotional impact on participants of sharing information that for many had been repressed or too emotionally charged to deal with in the past. My twenty years of clinical experience was of considerable benefit in enabling me to create a safe holding environment for participants' painful and uncomfortable feelings. I adjusted my stance as participants moved through different areas of their experience. I have mixed feelings about Waldrop's assertion that this type of interview not be construed as a form of
"mental health assistance". She indicated that the researcher's response to a participant's reaction is important, but she recommended that instead of offering comforting words when a participant is crying, to "just sit quietly and wait" (p. 243). I was aware that my purpose was not to provide "therapy" to participants and I believed in the importance of waiting and listening, but I also felt a responsibility to react like any human being would react when someone was in a great deal of emotional pain. There were times when I stopped the interview and suggested that we talk about what just happened, to acknowledge the participant's feelings and to assess whether to proceed. Several times, certain issues came up that I felt were important enough for the social worker who was working with the participant to be made aware of. Of course, this was always with the participant's consent and I never breached confidentiality. There were times when I
gently encouraged participants to talk with a counselor or social worker about this issue if they had not already done so. It would be correct to say that I did not view myself as a detached observer (neither did I want to). Rowling (1999) supported this perspective and asserted that being detached (which is commonly advised in textbooks on conducting research) prevents the researcher from fully eliciting and understanding the emotional reactions of participants.
Several researchers have discussed the "tension" that exists between being a researcher and a therapist (Nadeau, 1998; Rosenblatt, 1995) or "reporting from double lenses" (Ely, 1991, p. 137). The question is how much distance should one maintain from participants to keep the researcher role and how should one care for participants as someone who is a trained mental health professional? (Peshkin, 1988). I liked Rosenblatt's perspective that in-depth interviews about sensitive issues are "therapeutic experiences: they are "transformative or growth-producing moments, but [not] ... focused on growth or healing" (p. 151). I also identified with Rowling's (1999) suggestion that it would help if qualitative researchers in the bereavement field viewed their role as being 'alongside' and 'with' the participant, rather than 'in' or 'out' of the relationship.
Otherwise, it becomes a difficult balancing act of not being too 'in' the research process (by being enmeshed in participants' experiences), and not being too 'out' of the research (by being detached) (p. 179). After all, there is increasing consensus in bereavement research that we view participants not as objects but rather active contributors to research on their own loss and grief experiences (Klass, Silverman, & Nickman, 1996).
Many participants acknowledged the need for a study of this kind and expressed the hope that their participation would help others. Participants were informed that they had the right to receive a written summary of the findings once the study was completed, and they were given information on how to obtain this summary. Participants received a payment of RI 00,00 at the conclusion of each interview, as a gesture of appreciation for their participation in this study. Horowitz, Ladden, and Moriarty (2002) indicated that one way to recruit and retain hard to reach vulnerable individuals is to provide appropriate reimbursement. They indicated that "time and effort, as well as discomfort or difficulty involved in participating, are factors to consider when planning the value for reimbursement or incentives" (p. 325). Given that each interview was about one hour in
length, many participants had to travel a far way to come and be interviewed, and that the interviews were emotionally draining, I felt that RI00 was suitable reimbursement.